How Do You Cope with Hormone Therapy Side Effects?

What medication are you on? You can try others, although just the thought of trying another may be daunting. I understand how you feel being depressed. The side effects are bad and it’s scary. I had extreme insomnia at first and was thinking my life was over, but things slowly improved. I still have side effects but it is not as bad as it was at first. I’ve been on Lupron and anastrozole since July/August.

I’m so depressed and lonely too. Trying hard

I was on Exemestaine and stopped it after only 2 weeks.I was thick tongued. I couldn’t find words. I felt like when I moved my head my brain had to catch up. My executive functioning was impaired. I couldn’t execute tasks quickly and efficiently. I had a flat affect. I was quick to anger and to cry. It scared the shit out of me as I didn’t recognize myself and I felt worthless. I had suicidal thoughts and felt like I was going insane. I went off the drug and immediately felt better in 2 days. I was mad as my oncologist had not warned me of these possible side affects. I got 2nd and 3rd opinions from oncologists. I had a Mammoprint test done, as one oncologist thought my result was likely to be “ultra low risk” which would justify going off all AIs permanently. Unfortunately my result came “High Risk 1”. I stayed off the AIs for 2.5 months and my oncologist and I decided to try Tamoxifen at a half for 1 month. So far my symptoms are no where near as bad as they were with Exemestaine. I take it at night, which helps a lot. I will most likely increase my dose to the regular does of 25mg per day on 5/1/25, but if I start to feel like I did on Exemestaine I will stop taking it for good. All that being said, I am stage 1A. My tumor was only 4mm, my lymph nodes were clear, I have no known cancer genes and I had a double mastectomy so my absolute risk of reoccurrence is very low. The hormone therapy has been the most agonizing part of this whole cancer trip. I decided that for me, I am in my early 50s, I want to feel great while I am still relatively young. I don’t want to waste these precious, healthy years feeling like a shell of my former self. My advice is find an oncologist who is gutsy and creative and willing to work with you to find solutions. Don’t settle for an oncologist who only talks about “standard of care”. Find an oncologist who cares about the individual.

Caitlin, So sorry to hear how you are suffering. Susan had some great advice finding a doctor who listens and works with you. I know that’s a struggle, but please do not give up! Keep advocating for yourself. Only you know how you feel. Try to get your doctor to give you a break to get your bearings. But be forward & honest with your doctors. Try to jot down some symptoms to discuss to stay focused when you chat with your doctors. Please take care sending you virtual hugs.

Susan, What grade was your tumor?

Hormone therapy side effects can be incredibly challenging, and it's completely understandable to feel overwhelmed after everything you've already been through. Many others in this community have faced similar struggles with treatment side effects and the difficult decisions that come with them. Consider discussing your specific concerns with your oncology team, as they may have options to help manage side effects or adjust your treatment plan. Please reach out to share more about your experience - others here may have helpful coping strategies that have worked for them.